You are born into a town that has a strange custom. There is a family in town with a daughter who sits on the front sidewalk, and everyone in the town hits her with a whip as they walk by.

As you enter young adulthood you are handed a whip of your own. You are given the reasons she is whipped, “everyone does it”, “she doesn’t feel it”, “she deserves it”, etc.

But you are a compassionate person and you can see the pain on her face when she is hit so you choose not to. But you keep the whip. You use it sometimes to make the whipping sound when you are talking with your friends, even if you are near her or those who love her. You are taught the whip has other practical uses and you employ them all in your daily life, convincing yourself it has nothing to do with her.

Eventually public opinion slowly changes and eventually most people stop directly whipping her, besides a few of the younger townspeople. They continue to do it when the adults aren’t looking.

Now that she is no longer being continually whipped all day, she begins to stand and make a life for herself. But everyone keeps their whips. They use it to make the sounds even when she is near. They insist on its practical uses even when other tools would suffice for its job. They insist on their right to use it.

After sometime, you befriend the girl. You see that she is kind and sweet, beautiful, strong and hard working, but the damage the whips have done stays with her. The sound of the whips reminds her of her abuse and you can see the pain cross her face when the sound of the whips ring out. You can see the fear on her face when someone holds the whip in their tight grip. She says to you, “Friend, could you not find another tool for that job because the whip itself reminds me of my pain?”

Would you insist she has no right to claim it hurts her when it is not directly being used to whip her? Or would you, out of respect for her, choose another tool?

The whip is the “r-word: retarded”.

You may maintain that because you never hit her and because your current use does not intend to hurt her, she cannot claim it does. But you would be wrong. She is the victim and only she can determine what hurts. You cannot claim that because the intent of pain is not there, she has no pain.

So what do you do? Do you put down your whip, throw it out and pick up another tool for your daily tasks out of respect and love for her? Do you encourage others to do the same? Or do you continue to maintain that your God given right to use the whip outweighs any possible pain it may cause her?

The choice is entirely yours and only serves to reflect upon what kind of person you may choose to be: one who avoids inflicting unnecessary pain on the victimized; or one who values his or her own right to a word above all else.

When I started this blog, it was because we had just learned that our coming baby boy would have Down syndrome and I realized I didn’t know anything about it. I wanted a place to share what I learned.

In the beginning the information came slowly and wasn’t entirely helpful. Some things were good to learn, like why to end my habit of using the r-word in all cases (you can read my blog post about that here), or people first language like “people with disabilities” as opposed to “disabled people”. But overall, the information didn’t serve to calm my fears because I wasn’t overwhelmingly afraid. I knew that life is long and worry is wasteful.

I was, however, heartbroken and that is a completely normal way to feel when you first learn that your child will be different than you pictured. Honestly, I‘m beginning to think that all parents may have to go through this moment at some point in their lives, on some scale. That moment when you realize you cannot control, predict or plan all aspects of your child’s life. You mourn the loss of what you didn’t even know you had planned. The things you didn’t even realize that you just expected from them or for them. Then you accept it and maybe find the joy in it. And then you move forward, either with purpose and joy or simply because life never stops moving, or maybe a little of both.

The most important thing I learned before Levi was born was “he is a baby”. No joke. After the diagnosis, it became Down syndrome everything. Then somewhere I read, “The most important thing to remember is, no matter what, he is just a baby, who needs love and care like any baby”. This allowed me to put aside the diagnosis and wait to meet my baby boy. I needed to get to know him before the diagnosis.

But then we spent 2.5 months in the hospital after he was born. He had 3 surgeries and almost died twice. But this blog became such a source of strength for me. I could come here and share with friends and relatives how he was doing. But the message spread and eventually I was getting messages from people all over the world who were praying for him. I’ll never forget some of those stories, or those people.

When Levi came home, life became about recovery from everything we had been through over the last year or so. Yet even then, we discovered we weren’t quite out of the valley yet and life threw a few more nasty surprises at us regarding our finances. So I forgot my mission for this blog. I was still just surviving. But the things I was learning started trickling in. Therapy and services, how to get them, how to use them, what they do, how to do them, etc. These were on top of the self-learned lessons like how to manage having two kids under two years old, and maintain a marriage, and maybe a friendship or two.

Since then, we’ve moved to Seattle and life is good. We love it here so much! But the information is really pouring in now. Levi is 2.5 years old. In the U.S., a child who has disabilities receives Early Intervention services from birth to age 3. At 2.5, they begin testing to see if they still qualify for services through the U.S. Education system and at 3, they enter preschool. There is a LOT of information to sift through at this age.

I don’t feel at this point my blog would best serve as a resource for those things (*I will link my favorite resources below the pictures). But I will share a few really important things I’ve learned.

I’ve learned that at this stage it is imperative to just to take things one small step at at time. Sometimes it feels like all the information is just rushing at me. But I have to learn to be selective about what information I allow my mind to take in each moment. To-do lists are my new best friends and when I’m feeling really overwhelmed, my to-do list becomes tiny objectives like, “1-Read the email”, 2-”Type part of a draft response”. Breaking it down to simplicity is definitely a necessity whenever I am feeling overwhelmed.

I’ve learned that I must remember to be in the moment. I am hardly ever able to complete a task without interruption. But I try to remember to be grateful for those interruptions, they sure are cute and all they want is a little help and attention. I remind myself, “It will get done”. Maybe not right now, but it will get done.

In the Age of Information, places to get more information are not lacking (*see a few below). But the best information I get is from Levi and Jayden themselves. They teach me new things everyday and what they have to teach me is by far the most important.

How to take it all in

How to splash in an ankle high puddle in a way that soaks you to the knees

For the most personalized help, find an ARC chapter in your area. And if you’re lucky enough to be in the Rocky Mountain area of the U.S., the Rocky Mountain Down Syndrome Association is incredible. If you’re not in that area, search Yahoo Groups or MeetUp for people in your area. Getting connected is the very best thing you can do. Not everyone can have the same experiences or learn everything so we get together and share what we know, making us a better, smarter, more prepared group as a whole.

Yesterday I cried at the gym, and not because I had the rockinest workout ever, although it was a good workout. I cried because of one woman’s simple kindness.

So let’s back up a bit.

Levi pulls hair. He has pulled hair since he learned his fingers could grasp and it has always been a thing. But as soon as he was strong enough to stand, and especially once he started walking, the hair pulling became a serious problem. When the Speech Therapist (S.T.) and Occupational Therapist (O.T.) would come to the house and sit on the floor to work with him, he’d run over and excitedly pull their hair. If anyone tried to hold Levi, he’d pull their hair and God forbid there was a little girl with long flowing hair at the play ground.

And when I say “pull their hair,” it’s not at all what you’re picturing (unless you’ve met Levi). It’s not cute or innocent or childish. He makes this face and tries to remove the hair from your scalp, yanking back and forth, tangling and breaking the prettiest of hair. Seriously, It HURTS! I’ll even warn people, “Oh I’m sorry, he’s trying to get close so he can pull your hair.” They say, “Oh that’s fine my daughter pulls my hair,” and even offer up their hair. Faster than lightening, he’s pulling and they look surprised, to say the least, at the violence of the experience.

Working with the AMAZING Kristin (O.T.) in Colorado we had gotten the hair pulling to a minimum but it still happened and whenever we’d go out, I’d keep a super close eye on Levi and often have to jump and pry his hands from a girl’s hair or snatch him away as he was reaching. He is remarkably fast when it comes to hair… really… really fast.

When we joined the YMCA in Colorado I mentioned that Levi had Down Syndrome to the staff. They told me I had to speak with the child care director. She told me that they could not afford to hire a staff person just to watch Levi so if he’s “too much” he can’t come. I was terrified for days that his hair pulling would mean we would be banned from the Y. Which echoes every Mother’s deep, deep secret fear that somehow YOUR child is the one they can’t handle. And of course, I worried about never being able to leave Levi with anyone but my Mom, who is one of the hardest working Real Estate Agents you’ll ever meet. And we all really needed this to work. I needed to work out, the boys both needed some peer interaction, and Levi had never been in a daycare type of situation before. Fortunately and VERY surprisingly, it did workout. They kept telling me, “Yeah, he was fine. He had fun! He did pull hair a little but we just gave him some food and sat him down and he stopped.”

Then we move to Seattle. The first month was just unpacking. But then I procrastinated signing up for the Y again. I really just didn’t want to go through the process again of hearing, “if we can’t handle your son, he can’t come”. Plus the hair pulling has gotten worse since we moved. We’ve taken the kids to some amazing places since we moved here, but if there is gorgeous flowing hair anywhere in Levi range, he is ON IT. ”Closely watching him” has become “constantly hovering over him” (not exaggerating at all, literally back bent constant hovering) and to be honest, it’s not much fun… In fact it’s turned every outing into an anxiety riddled ready to pounce and apologize embarrassment fest… Even at the grocery store, he reaches out of the cart and pulls the hair of people walking by, or the cashier putting the bags in the cart. Over and over and over embarrassment and apologies. And I haven’t even started on the screeching…

We tried to find a new home church here and the one we tried, told us to “warn them if we planned on returning” so they could have extra staff members on hand to handle Levi, which just added to my mounting anxiety about signing up for the Y.

Yet eventually I did do it. I took the plunge. I signed up for the Y and dropped the boys off. Entering the child care was a MUCH simpler process here and I didn’t have to have a “chat” with anyone a head of time. But when I dropped him off, I warned them about the hair pulling. ”He has Down Syndrome and he doesn’t speak very many words, although he understands most and uses some signs. Also part of the DS is that he has some sensory issues. He grasps things very very tightly and he pulls hair. Here’s his oral therapy tool. If you can get him to chew on it sometimes that stops it. Gently blowing in his face sometimes works. Here’s how you sign ‘no’ and ‘stop’.” etc. etc. I wasn’t expecting a miracle but I was praying for one.

The first time, all the tricks worked but I only left them there for 40 minutes. The second time, nothing worked. Levi will just not stop pulling hair. So they put him in the high chair with some toys, not for the whole time, but for a while. At least at the other Y, they were feeding him when he was in the high chair. This one has a “no food” policy so it’s just toys. I understand the staff has to do what they can so I try to be ok with it.

But I can’t bring myself to go back for a week. It nags at me. The image of Levi sitting there alone, while the other kids run and laugh, scream, imagine and learn. I convince myself it’s not good for Levi and that’s enough of a reason to not go. I feel like half of the reason to go is for the boys to run about and burn some energy. I feel like it’s better for Levi to stay home if he can run in circles at home but is unable to run at the Y. And I worry this is a glimpse of Levi’s future. Exclusion.

And I don’t know if I’m ready. I’ve read the blogs. I follow the groups. I know it is my new destiny to be always fighting for Levi’s full inclusion. But I just don’t know if I’m ready.

But I NEED to workout. The boys NEED to get out of the house and they both NEED some friends.

So we go again (after a dream where Snooki shamed me about not working out lol).

I’m on the elliptical warming up and trying to keep my heart rate at that low fat burn rate but I know my heart is racing, worrying about Levi and all those whose hair is being pulled. He pulled a staff person’s hair before I even left the room when I dropped him off. But I did my whole routine and took out some anger on that horrible crossfit ball (that I love to hate because it makes me feel awesome to even know how to use it). Then went to check on Levi. There he was, in the chair. But a little boy was standing there, talking to him and sharing some toys. So I decided for now, this would have to do, and went to do my cardio on the elliptical. After my cardio, I always rest before I pick up the boys because I worry my muscles will fatigue as I carry a 30lbs two year old, his diaper bag, water bottle, coats and possibly shoes, and drag a 37lbs three year old to the car. But before I rested, I checked on Levi. He was in the chair but a staff person was sitting at the table with him, chatting with him. Then she laughed and picked him up smiling! By the time I got back after resting, he was sitting on the floor, happily playing with toys and other children, surrounded by children and staff and all their flowing hair, and NOT PULLING ANY!

So the lady who came to check the boys out was the same person whose hair had been pulled before I even started my workout. She told me about how he was in “time out break” a few times but they were talking to him about pulling hair. Then one of the other staff held him for a while and eventually he stopped. Then she said, “You know, he’ll get better. And if there is anything we can do to help you, to help him as he learns, just let us know. Just tell us what we can do.” And I cried.

I’m always so afraid of being an “inconvenience.” I don’t know why but it is a huge fear of mine. But it is something I will be doing a lot as Levi gets older. Unfortunately full inclusion for children with disabilities is hardly ever “convenient”, although it is often beneficial for all parties involved.

But with those simple words, she made me feel like I wasn’t an inconvenience, I now had new partners in the many of us involved in raising and teaching Levi. What a blessing! Then she spent 5 minutes listening to me about all the work we’ve done and all the theories we’ve had and all the tricks we’ve tried. I now feel like for 90 minutes a day, I have a whole team that’s got my back so I can go do what needs to be done to be the best Mommy I can to my two rambunctious boys. And when you’re feeling a bit alone in a big new city, that is really, really an amazing feeling to have.

Edit: So it took me a few days to publish this since I originally wrote it. Since then, we’ve been back to the Y a few times and he hasn’t pulled hair there at all!

So in the Todd house, Saturday is “Adventure Day”. At the beginning of the year, we talked about the fact that there are only 52 weeks in a year. That’s only 52 Saturdays, 52 chances for adventure. When we first moved to the Seattle area in September, I was worried it was going to be hard to find new adventures. But so far the Seattle area has been a land of adventure opportunity.

I found this place on the side of the road one day while I was lost on my way home from the grocery store. It’s just two park benches and a drinking fountain. Totally random jewel of a find!

Jayden LOVES the ocean.

This was an AMAZING mutil-level park build onto this hillside at Richmond Beach.

Jayden pushing his baby brother on the swing <3

Reminds me of Portland’s Rose Garden for some reason

Picnic tables everywhere!

Wild blackberries line the paths everywhere here!

Hidden bridges are magical. (It’s a little thing behind the fence. That path was temporarily fenced off for erosion control)

And of course “TRAIN TRACKS” as Jayden loves to exclaim.

Wild tomatoes (maybe? I wasn’t about to just eat them) on the beach.

It still doesn’t seem real to me that I am only a few minutes away from the ocean now!

It’s been on my heart for a while now to write something along the lines of what she wrote. But she did it kinder than I could seem to word it, so I never posted mine. I wanted to call the Down Syndrome community to a greater spirit of openness. We need to be better at not taking offense when none was intended. We need to be accepting of others who don’t understand how or why the things they say can be painful for us, especially if we want them to accept us back. We need to choose our battles wisely and not go to war with every sideways look, even if the war is only waged inside our heads.

I know life already asks a lot from parents of children with disabilities and I know it seems unfair to ask for more. But if we could show the world how to accept everyone, even the un-knowledgable and unintentionally insulting, then I think, they could learn to accept us too, even when we don’t know how to manage every situation with our kids. Obviously this whole conversation excludes the intentionally mean and hateful people of the world. But I believe those people are the rare exception and count for a lot less of our interactions than we sometimes allow ourselves to believe.

Anyway, click the link above and you’ll see what I mean. It’s a beautifully written letter and I definitely cried a bit. <3

Sometimes it’s so completely unbelievable to me. Dear friends, I need to ask you pray and send your thoughts to little baby Cameron. I’m not going to give details, because his story is not mine to tell. But I will say his and his family are going through the darkest hours now and it breaks my heart to remember those shadows. When the exhaustion of the long fight sets in and the constant set backs become too much to bear… During that darkness you guys were my shining light. Knowing friends and family all over the world were praying for Levi’s healing was a constant and unremovable light in the night, and you will never know how much it truly meant to me. Please pray now for Cameron. Please. Please God heal this precious child and please set his family free to go home and start their real lives, new, healed and refreshed.

Josh got a job offer and after MUCH deliberation, we have decided to go for it. When I say “MUCH deliberation”, I mean MUUUUUUCH. We even made a matrix to help us decide. You make a list of all the really important things in your life and give each a score on a scale of 1-10. You can have like a bunch of things that are 10′s, a few 8′s and a couple of 5′s or whatever. Then you make two columns, Denver and Seattle. The points for the item go in the appropriate column. So the thing you can only get in Denver puts its points in that column and visa versa. NOT EVEN JOKING, IT WAS AN EXACT TIE!! =O

But in the end, we felt it was really the best decision for us for many reasons.

So I am super stressing right now! We are hoping to move next weekend but we were also hoping to do a garage sale. Josh has to finish his projects at work and his finals are coming up. Streeeeeeeesssssssss. lol One step at a time though.

I’ll probably have more to say on this as it gets closer but for now I’ve gotta run! I just wanted to get the word out!

I has a secret(Photo by Brittany Michelle http://brittanymichellephoto.net/?p=1774)

Josh and I have gone to the Renaissance Festival every year for a while now, but this year was the best! The boys were finally old enough to start enjoying it for themselves and that made it incredibly more enjoyable for us too. The steep hills and rocky paths were not easy for Levi to walk. But it was good exercise for him to try and we could not have asked for better weather!

If we don’t get 5 hrs of readings, the study is no good. It has to end by 6:30 at the latest so I as type this, I’m holding my breath and not daring to move even though I’m sooooo uncomfortable. If he wakes up at all again, it’s over. At 11:30 I had to call Josh to bring medicine because they don’t keep Children’s Tylenol in the Chikdren’s hospital apparently. Lol. Well that and we needed the gripe water. He got the medicine around 12:15 but continued to squirm. He did fall into a good sleep around 12:45 but the nurse needed to fix a few more wire. This woke him up completely. We redid what we could …
And before I finished typing this, he woke up. The nurse says she’s hoping the dr’s can pull some information from it but he really didn’t sleep that long. Gah. Tired, frustrated, heading home.